ImproveCareNow Patients


Crohn’s made it hard to participate in simple things

My name is Robbie. I’m 18 and a college student. I was 15 when diagnosed with Crohn's disease; luckily I am in remission now. An interesting fact that people don't know about me is that I captained my school's Trivia team and we went on TV for competitions!


IGNITE – It starts with us.

Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:


It's OK for IBD to take up space in my life

My name is Shira and I'm currently a junior in high school. I was diagnosed with ulcerative colitis in the fall of 2018 but I am being reevaluated for Crohn's disease at the moment. Something interesting about me is that my mom and a few other family members of mine also have IBD!


With IBD, I’ve gained a lot of empathy and perspective and learned a lot about privilege

My name is Seth. I am 17 years old and a rising high school senior.  I was diagnosed with Crohn’s disease in sixth grade. I had a relatively typical path to my diagnosis. After a few years of worsening symptoms (stomach pain, constipation, and vomiting), I went into the hospital, where I had a gastric emptying scan and upper endoscopy, and then labs, a CT Enterography, and finally a colonoscopy. After a few weeks on Prednisone, I started IV Remicade, which I have been on ever since. Outside of Crohn’s, I play trombone and tennis. I’m also very involved in politics, and I was recently an intern for two congressional candidates in Ohio.


Crohn’s swept life as I knew it out from under me

Hi! My name is Mary and I am 19 years old. I am currently in nursing school. I was diagnosed with Crohn's in 2018. One interesting thing about me is that I have 3 nephews and a niece!


Patient Perspectives on Telehealth and In-Person Care in the Time of COVID-19

COVID-19 – the illness caused by the novel coronavirus (SARS-CoV-2) – has brought unprecedented challenges for both patients with IBD and their care providers. In this post, members of the Patient Advisory Council share perspectives on accessing telehealth and in-person care in the time of COVID-19, and recommendations for improving together.

We believe these perspectives are important for individuals with IBD to review and consider, because the quality of our care is directly tied to our long-term health and wellbeing. If we possibly have less effective care during a pandemic, it can have downstream effects on our health and our lives.


What I Need, When It’s Needed – Communication and information seeking preferences of parents and patients are highly varied

As we have shared in previous #WINWIN posts, the ICN Engagement Team is committed to gathering and effectively sharing information, knowledge and know-how that may help patients with IBD and their families. In a 2019 survey the Engagement Team asked the ICN Community to share how they prefer to connect, find and receive information. Their responses are helping us learn how to get the right information to the right people at the right time on their IBD journey. In this post we are sharing feedback related to communication and information seeking preferences of patients and patients.

This is a work in progress. Our ultimate goal is to get the right information, to the right people, at the right times and using a method that works for them. We want patients and families to have what they need, when the need it! If you have thoughts to share on these topics, please contact us so we can learn from you!


Innovation Update – IV Sweatshirt prototype is comfortable and efficient

Ella and I want to thank you all for your incredible response to our first blog post where we introduced the IV Sweatshirt Project! If you haven’t read our story yet, we encourage you to start there – in it we share about Ella’s diagnosis with Crohn’s disease, our journey to find a treatment that worked for her, and how her experience ultimately led us to create something together to help kids like her stay warm and comfortable while getting infusions.

After a few trials and some delays due to COVID-19, we are excited to share that we have received a solid prototype of our IV sweatshirt design and have been able to test it at our infusion center!


I’m not sure it’s Crohn’s yet, but I’m building a strong support center within myself

I'm Lexi - a rising high school senior. In December 2019, I was having severe nausea, vomiting, and abdominal pain. The doctor at Urgent Care thought my gallbladder was the cause of my pain and suggested I go to the emergency room immediately to have it removed. At the ER, after many tests, they determined it was not my gallbladder but could not figure out the cause of my pain. I was referred to a pediatric gastroenterologist.


I've begun experiencing more of life

Hi! My name is Laurel and I am a 20-year-old college student, majoring in Human Biology. I was diagnosed with Crohn's disease in 2012 and have been on biologic infusions ever since. One thing many people don't know about me is I absolutely love insects and am minoring in entomology!


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